War on prescription drugs: what if you depend on opioids to live a decent life? | US news | The Guardian | by SE Smith | July 2016
The Guardian, a British newspaper, seems to understand that the issue with opioids is complex, and publishes articles sympathetic to both people with addiction AND people with pain.
The US is facing what many are describing as an opioid crisis
But in the swirl of debate over the subject, there’s one group of Americans we aren’t hearing from: chronic pain patients, many of whom need to use opioids on a long-term basis to control their pain effectively.
Unlike patients with acute, short-term pain or pain associated with terminal illnesses such as cancer, they’re looking at a lifetime of living with conditions such as Ehlers-Danlos syndrome, fibromyalgia and endometriosis, along with many other disorders associated with chronic pain.
Others are dealing with persistent pain from injuries.
Many have conflicted relationships with the medications they need to enjoy a good quality of life, and they fight a tough battle against negative public perception and cultural attitudes
They’re struggling with issues that aren’t being accounted for in conversations about dependence, addiction and the safe use of opioids for long-term pain management.
Heather Ace Ratcliff, who has Type 3 Ehlers-Danlos, a connective tissue disorder characterized by hypermobility which allows her joints to dislocate and subluxate easily, says uninformed views can stigmatize chronic pain patients who are struggling to access relief.
“I am regularly treated as if I am overreacting, a hypochondriac, or a drug addict for wanting an increase in pain management,” she says, illustrating the consequences of misinformation about opioids and pain.
Even though many patients recognize that opioids help them manage pain effectively, some still fear them, worrying that their relationship with their medication may be sliding into addiction.
In an environment where physicians who aren’t extensively familiar with pain management and opioids can leap to conclusions, it can be difficult for patients to have honest conversations with their doctors about their concerns, as they may fear being chastised or cut off.
Shayla Maas, another patient with Type 3 Ehlers-Danlos who also has an autoimmune disorder, says that the conversation surrounding opioids sometimes makes her paranoid about her medications.
Anna H, a patient with fibromyalgia, shares these worries. “I’ve been taking relatively small doses of pain meds every day for about six years, but I’m still afraid that taking a certain amount of pills – even if I’m in a lot of pain – will send me down the path of addiction.”
Their fears are to some extent grounded in reality: opioid medications can have an addicting effect.
But the real story is more complicated.
“Opioids are the cornerstone of the treatment of pain,” explains doctor Anita Gupta, a board-certified anesthesiologist, pain specialist, pharmacist and vice-chair of Drexel College of Medicine’s division of pain medicine in Philadelphia.
Gupta makes an important distinction between dependence and addiction, cutting to the heart of one of the greatest misunderstandings in the conversation about pain management.
“If you’re on opioid medication for a long period of time, you become dependent,” she explains.
“When a need becomes a want, that is really an example of when someone can become addicted. When you want it and you can’t live without it, can’t survive without it, it interrupts your day to day life, that’s addiction.”
Even with the weight of patients, family, and medical providers behind these groups, they aren’t always treated as stakeholders in processes like developing new guidelines for opioid prescription and use.
“There’s a saying that goes something like: ‘We are all one drink or pill away from addiction,’
A motto designed to humanize the experience of addiction has been turned into a weapon that targets people who rely on opioids for pain management, and that translates to real-world stigma.
The judgmental comments she receives make her feel like people think she’s taking opioids for the fun of it.
“Believe me,” she says, “this is not for fun.”
“But the media coverage of the ‘opiate epidemic’ as driven by pill pushing-doctors and by pain patients worries me a lot, and I think it is already being used to forward the idea that people in chronic pain should not have access to relief from their pain.”
Both Maas and Anna articulate worries that chronic pain patients are being “thrown under the bus”. Doctor Jerrold Winter, professor of pharmacology and toxicology at the University at Buffalo, tends to agree, and is concerned that new CDC guidelines and other efforts to address opioid use could actually make the situation worse.
“I think [the CDC guidelines] go much too far and
a) will leave many in pain and
b) will drive some seeking pain relief into the illicit market with all its hazards,” he says.
“Indeed, two NIDA officials recently pointed out that the rate of deaths from prescription opiates between 2011 and 2013 were stable while heroin-related death rates rose dramatically. I fear that this trend will only worsen under the CDC guidelines.”
Gupta points out that the most important tool for addressing addiction is a simple conversation
Patients experiencing cravings for their medication along with symptoms like mood changes, difficulty sleeping, oversensitivity to stimuli and increased blood pressure may be exhibiting signs of dependence that has transitioned into abuse.
That requires both clinician and patient education, as well as listening to the fears of chronic pain patients like Maas and Ratcliff as they attempt to balance chronic pain, fears about forming addictive habits and frustration with public perception.